An insider's view of Parkinson's Disease and DBS

Val's Vantage of the 2nd World Parkinson Congress

By Valerie Graham, Copyright 2011

Photo of Kate Kelsall (left) and Valerie Graham (right) at the 2nd WPC in Glasgow, Scotland

Before any more time elapses, I wanted to report the highlights, from my perspective, of the 2nd World Parkinson Congress ("WPC" or "2nd WPC"), which Kate Kelsall and I had the good fortune to attend last fall in Glasgow, Scotland. Given the breadth and depth of the conference, it would be difficult to capture such a grand event in just a few words. Nevertheless, I would like to share with those of you who made this extraordinary opportunity a reality for us, some of the more memorable moments for me from the conference.

Logistically, travelling from the safety and comfort of our homes in Denver to the shores of a foreign country, albeit one which purportedly shares a common language, proved to be somewhat less of a challenge than we had originally anticipated. Although it took us more than a day to reach our ultimate destination in Glasgow (flying from Denver to Chicago, Chicago to London, London to Glasgow), Kate and I arrived none the worse for wear— the fact that we both suffer from chronic insomnia secondary to Parkinson's Disease ("PD") served us well during the long trans-Atlantic journey involving three plane changes each direction.

Furthermore, the misgivings which I had initially harbored as to whether I would be able to keep my recently implanted Medtronic rechargeable DBS battery adequately charged throughout the long airline flights proved to be without foundation. The biggest hurdles that we faced were the seemingly endless concourses at Heathrow International Airport and the long lines passing through security and customs.

The last leg of the journey became infinitely less tiresome for me when I realized that I was propitiously seated next to a young Asian woman, Dr. Yih-ru Wu, a neurologist and professor at Chang Gung University and Chang Gung Memorial Hospital in Taipei, Taiwan, who was also bound for the WPC. During the course of our conversation on the plane, Dr. Wu personally invited Kate and me to attend the Pan-Asian PD conference which was scheduled to take place shortly after the 2nd WPC. Apparently, this conference-attending could turn into a full-time gig!!

Arriving at our destination late in the afternoon on Monday, September 27th, Kate and I checked into the Hotel Campanile, the modest accommodations provided to us courtesy of the travel grants that we were awarded by the WPC. Despite the fact that the room which had agreed to share was tiny and noticeably lacking in closet space, the hotel management and staff was friendly and welcoming, not to mention remarkably helpful both in achieving a satisfactory solution to the dilemma presented when the adaptors which we had purchased in the States would not fit in the single outlet which our room boasted, as well as with regard to our repeated requests for assistance in connecting our laptops to the internet. Without a doubt, however, the biggest advantage to the Hotel Campanile was its proximity to the conference site, a relatively easy 10-minute walk away.

It would be difficult to underestimate the impact of being in the presence of approximately 3,000 physicians, scientists, researchers and allied health professionals who have dedicated their lives to better understanding and ultimately developing a cure for Parkinson’s, not to mention hundreds of fellow Parkinson’s patients and their care partners. It was both an inspiring and humbling experience! The sheer synergy of ing in the midst of such an august group was undeniable!!

Overall, I was struck by the unflinching commitment of those not afflicted by the disease to unravel the mysteries of Parkinson’s, including that of pioneering neurosurgeon in deep brain stimulation ("DBS") surgery, Dr. Alim Benabid from Grenoble, France, who was one of the presenters at the WPC. As the week’s activities unfolded, however, it also became abundantly clear that, in spite of the many exciting discoveries and promising avenues for future research, the consensus is that PD is a much more complicated illness than most originally suspected, affecting virtually all areas of the body, not simply the dopamine-producing neurons in the brain, in many cases years before the motor symptoms which are the disease’s hallmark manifest themselves. Although not a new concept to me, it was nonetheless sobering.

I was equally impressed by the courage and accomplishments of our fellow persons with Parkinson's ("PWP") and those whose lives have otherwise been personally touched in some fashion by PD, many of whom were speakers or facilitators of workshops at the conference, including:

Bryn Williams, perhaps better know for his blog at WobblyWilliams.com and one of the keynote speakers at the opening ceremonies;

Gavin Hastings, former rugby captain of Scotland and the British Lions, another keynote speaker at the opening ceremonies, who broke his silence during the conference to publicly announce that his wife of many years had PD;

Tom Isaacs, co-founder of The Cure Parkinson’s Trust and manager of the Trust’s fundraising arm, “Movers and Shakers,” who completed a continuous walk of 4,500 miles around the coastline of Britain, singlehandedly raising $600,000 for PD research in 2003;

Dave Iverson, the American correspondent for Frontline and star of the PBS documentary, “My Father, My Brother and Me” which details Iverson’s personal journey to understand the disease which has taken such a toll on his family; and

Davis Phinney, former professional cyclist and celebrated winner of the Olympic Bronze medal and various stages in the famed Tour de France, the world’s most prestigious bicycle race, who has had DBS surgery for Parkinson’s.

The following is a brief recounting of some of the highlights of the week from my perspective:

-- the profoundly stirring refrains of bagpipes played by the Royal Burgh of Renfrew Pipe Band which heralded the closing of the Opening Ceremonies at the 2nd WPC;

-- being seated at an elite dinner for partners of the WPC as a guest of the Parkinson Association of the Rockies at the same table with the surviving spouse of the founder of the Parkinson Association in India, who was swathed in an elegant silk sari;

-- listening to the cogent remarks of Dave Iverson at his presentation entitled "Genetics and Me: Patient Perspective" and experiencing an "ah-hah" moment when he suggested that the reason he chose not to have genetic testing was not due to his own personal reluctance to have his genome revealed, but rather due to the impact which such knowledge might potentially have on his family. It occurred to him that should he proceed with testing and some of his family members not wish to know the results, the burden such knowledge would impose on him would be too great to bear. For a discussion of this point, please see Kate's blog at http://katekelsall.typepad.com/my_weblog/2010/10/the-three-iverson-men-share-something-in-common.html.

Mr. Iverson has been a producer, writer and correspondent for public broadcasting for 30 years. Most recently, he was the writer, correspondent and co-producer/director of the February 2009 PBS Frontline documentary "My Father, My Brother and Me," which explored his family’s battle with Parkinson’s Disease. Iverson is based in San Francisco, where he also hosts radio and television programs for public broadcasting, including the Friday edition of Forum on KQED public radio. To view Iverson's PBS documentary, see http://www.pbs.org/wgbh/pages/frontline/parkinsons/view/;

-- viewing the remarkably creative quilt patches which were submitted by PWP, their loved ones and various Parkinson’s organizations, my favorite of which was one that boasted “Will work for dopamine!” To see the entire collection of patches submitted in connection with the quilt project, see http://www.worldpdcongress.org/about/art_music.cfm;

- and while we are an artistic bent, for a general overview of photos taken at the 2nd WPC, please see http://www.flickr.com/search/?q=World+Parkinson+Congress. For my personal photos of Kate and my extracurricular adventures in Scotland, including our lovely final day in Scotland touring the countryside with Joyce and Jim Dalziel, Kate and her husband Tom’s friends and co-workers during the time they lived in Calgary, Alberta, Canada, some 30 years ago, see http://gallery.me.com/dgraham999/100233;

-- Mr. William O'Connor of the Glasgow College of Holistic Medicine, who gave me a heavenly massage one afternoon during the conference in the Rest and Regeneration Room while discussing politics with me; and

-- having the opportunity to meet and participate in a workshop conducted by Denver native and zany actress, Lucy Roucis, who also had DBS for Parkinson's. Ms. Roucis, who is a member of the world renown theatrical group PHAMALY (Physically Handicapped and Musical Artists League, Inc.), recently had a cameo role in the Hollywood film "Love and Other Drugs," starring Anne Hathaway and Jake Gyllenhaal.

In addition, during the 2nd WPC, participants were encouraged to view and sign the WPC Global Pledge. If you would like to add your "John Hancock" to this pivotal statement, please click on the following link: http://www.parkinsonspledge.org/.

The 2nd WPC concluded with great fanfare touting the 3rd WPC, which is to be held in Montreal, Quebec, Canada, on October 1 - 4, 2013. To view the press release regarding the next WPC, see http://www.worldpdcongress.org/about/WPC2013_release.cfm.

To view the complete final program from the 2nd WPC, please see http://www.worldpdcongress.org/program/WPC2010FinalProgram2.pdf.

And, last, but certainly not least, appended to this report is the Abstract which Kate and I presented at the 2nd WPC entitled "Role of Patient Support in Shaping Expectations and Decision-Making with Deep Brain Stimulation Surgery," followed by PDF's final press release regarding our attendance at the 2nd WPC.

We will be eternally grateful to you all for allowing us the rare privilege to participate in this seminal conference! Thank you from the bottom of our hearts!

Warmest personal regards,

Valerie Graham

Co-Founder and Co-Facilitator of the Bionic Brigade, a DBS support group;

DBS Patient and Family Liaison, Volunteer, University of Colorado Hospital;

President, DBS Voices of the Rockies, a Colorado nonprofit corporation;

Congressional Coordinator, 6th Congressional District of Colorado for the Parkinson Action Network;

Local Parkinson’s Advocates Travel to Scotland for World Parkinson Congress

New York, NY, October 28, 2010 -- Colorado residents and Parkinson’s disease (PD) advocates Valerie Graham and Kate Kelsall attended the 2nd World Parkinson Congress (WPC) in September in Glasgow, Scotland. They joined nearly 3,000 other advocates, care partners, leading scientists, doctors and healthcare professionals from around the world, to discuss the latest in Parkinson’s research and care.

While both women are well-known advocates in the Parkinson’s community, up until just a few weeks before the WPC, they were not sure they would be able to attend. Due to a series of fortunate events, they were able not only to attend the congress, but also presented a poster about their advocacy efforts and worked with 15 of their fellow advocates from the Parkinson’s Disease Foundation (PDF) to bring news from the WPC back to the US Parkinson’s community.

Ms. Graham, a retired attorney from Centennial and Ms. Kelsall, a retired public accountant from Northglenn, whose education and training includes an MSW and CPA, have both been living with Parkinson’s for well over ten years. Their work focuses on the needs of people, like themselves, who have undergone deep brain stimulation (DBS), a surgical procedure used to treat the disease. Last year, the two attended PDF’s Clinical Research Learning Institute (CRLI), a program that trains people with Parkinson’s to become advocates within the clinical research process. They say that this experience allowed them to continue their work, with a new focus on educating others about clinical trials, and finding ways to include their own voices in the research process – which they did at the WPC.

At the WPC, as scientists presented the latest in Parkinson’s research, Ms. Graham, Ms. Kelsall, and other people with Parkinson’s presented information on the efforts they undertook to further the cause in their communities. The pair’s poster, entitled “Role of Patient Support in Shaping Expectations and Decision Making for DBS Surgery,” focused on the impact that their volunteer work with the DBS support group and the DBS medical team at the University of Colorado Hospital has had on patients considering the surgical procedure, as well as on patients' families. Furthermore, as a means of expanding the volunteer services that they provide to the DBS and PD communities, Ms. Graham and Ms. Kelsall formed a nonprofit corporation, which was accorded federal tax-exempt status shortly before their departure to Scotland.

While Ms. Graham and Ms. Kelsall were initially awarded partial travel scholarships to help cover the cost of attending the WPC, these scholarships did not include airfare. Thanks to a last minute donation from a couple of individuals, as well as from United Airlines, two round trip tickets were provided for the pair, enabling them to arrive in Scotland prior to the commencement of the WPC.

Ms. Graham says that their story is “proof positive that miracles do indeed occur! Needless to say, we owe a profound debt of gratitude to those around us, without whose guidance and support we would never have even considered attending the 2nd WPC, much less submitting an abstract for presentation at the conference.”

PDF Executive Director Robin Elliott says, “PDF is very proud of the work that Kate and Valerie presented at the 2nd World Parkinson Congress in Glasgow, Scotland – a poster that was seen by nearly 3,000 people. They are wonderful examples of the purpose behind PDF’s Clinical Research Learning Institute: to ensure that people with Parkinson’s are empowered to play a role in all aspects of the Parkinson’s community’s work.”

About Parkinson’s DiseaseParkinson’s disease is a progressive neurological disorder that affects nearly one million people in the US and seven to 10 million people worldwide. Although promising research is being conducted, there is currently no cure for Parkinson’s.

About the Parkinson's Disease FoundationThe Parkinson's Disease Foundation (PDF) is a leading national presence in Parkinson's disease research, education and public advocacy. We are working for the nearly one million people in the US who live with Parkinson's disease (PD) by funding promising scientific research to find the causes of and a cure for Parkinson's while supporting people with Parkinson's, their families and caregivers through educational programs and support services. Since its founding in 1957, PDF has funded over $85 million worth of scientific research in Parkinson's disease, supporting the work of leading scientists throughout the world and has dedicated over $34 million to support people with Parkinson's and their families and caregivers through its educational and advocacy programs.

At the heart of PDF's work is the participation of people with Parkinson's. Whether it is through its People with Parkinson's Advisory Council, which advises PDF on all aspects of its work, or the Clinical Research Learning Institute, which trains people with PD to play a part in the clinical research process - the perspective of people living with Parkinson's ensures that PDF's work is on target and meets the needs of the community.